Coming Up for Air - Coping with Bladder Cancer Treatment
"I've done this before," I have always said. Intravesical chemotherapy for non-muscle invasive bladder cancer is nothing new to me. I have survived TURBTS with mitomycin, and even a couple without it. I have experienced mild irritations similar to actual bladder cancer symptoms.
For these reasons, I assumed I knew exactly what to expect.
From recurrence to treatment and back again
Now, 17 years after my initial diagnosis, I can confidently say that it has not all been the same. Albeit mild compared to late-stage treatment, it has been an assortment of unique episodes.
With a sense of optimism
This year, I had my first chemo induction through a series of instillations. I'd say I got through them fairly comfortably. The physical side effects were spasms, fatigue, excessive sleepiness, swollen lymph nodes, and mouth sores.
I finished the 6-week course with a definite sense of optimism and didn't lose my hair. About 14 weeks later, I completed the first 3-week maintenance round.
During maintenance week 2, I had unbearable spasms during the instillations. I couldn't hold them for the full 2 hours. Their intensity made me extremely nauseous and caused pain in my lower right abdomen. That is, by the way, one reason why I insisted on remaining at the urologic oncology clinic for the entire treatment. There could be unpredictable complications.
Although the pain was relieved by emptying, it still occurs whenever my bladder gets full. The moment I feel the urge I must empty to avoid abdominal pain. This is, by far, my most uncomfortable side effect from intravesical chemo.
The bladder hurts sometimes, and my holding capacity has diminished. Poor bladder!
Coping with bladder cancer treatment
The oncology nurses informed me that bladder irritation is the best sign that the drug is working. They've also told me that symptoms can vary from the beginning to the end of treatment. So, while I cannot say that I was prepared for the nuances of my inductions, I was certainly informed.
Through it all, I realize how mental and emotional stress can also be side effects of any cancer treatment. I still shrink from the idea that my case is serious. I know it is in the sense that I must prevent cancer progression. Although I haven't been afraid of dying, I carry concern and guilt.
Life goes on around me
Meanwhile, my bladder cancer could turn on a dime if I'm not diligent. There is a sense that while I am in treatment, life goes on around me. I might be missing out on some things. What things, I don't know. At any rate, these feelings have been swirling around like a whirlpool.
A friend once commented that I am "killing the chemo game." But I'm not sure I can own that, since mine is truly a less aggressive treatment plan. After two TURBTS, a 6-week gemcitabine induction, and a 3-week maintenance course, I will return for another cystoscopy in 3 months. That means I will either have another surgery or a 2nd maintenance course. It all depends on what we find. In the meantime, my job is to practice healthy living.
Healing the mind and body
A significant portion of my healing will involve attending to my childhood and adulthood PTSD. Yes, I admit it. I cannot hide or deny it any longer. There is no use trying to heal the body without the mind and emotions. Nor do I want one without the other. Therefore, the first 6 months of this year have been all about completing a bunch of health follow-ups. Yes, it is exhausting. But it is worth it to attend to some things and cross others off the list.
There is much to say about being strong through your cancer treatment. But no one gets through it without a strong support network. Furthermore, no good support network should ever go to waste. It should be utilized. For that to happen, we must overcome the fear or shame of receiving help. I believe it is a sign of strength to admit I don't know it all. That I might benefit from someone else's gift.
No shame in the healing game
I encourage the newly diagnosed and bladder cancer survivors to give their mental and emotional selves the care they deserve. Your needs might differ from mine. You might respond to a different mode of intervention. Just don't assume there is a single criterion or description for everyone. One size doesn't necessarily fit all.
The important thing is to find what fits you and take care of yourself. Admit when you're not okay and need more. Don't be afraid to share your needs with someone you trust. Allow the village to form a cocoon around you.
There is no shame in the healing game.
Have you ever experienced caregiver burnout?